death is especially hard to accept, hospices may similarly devise different names for their pediatric programs as well as rethink their models of care. As noted later in this report, parents may dread—even hate the thought of—hospice care and may be reluctant to participate in explicit discussions about their child’s prognosis, recognize the burdens of certain treatments, or prepare for their child’s death.
The broad principles of palliative and end-of-life care apply to children as well as adults. Nonetheless, differences in children’s anatomy, physiology, psychosocial and cognitive development, and social and legal status require that assessment, treatment, communication, prognostic, and decisionmaking strategies be adapted to each child’s level of development.
Grief is the term usually used to describe people’s feelings and behaviors in response to death. Sadness, numbness, anger, sleep disturbances, inability to concentrate, fatigue, and similar feelings and behaviors are normal responses to a loved one’s death. Research suggests that the death of a child prompts more intense grief than the death of a parent or spouse. (See Appendix E.)
Anticipatory grief often occurs in advance of an expected loss. Such losses may include not only death but also losses of expectations for a “normal” life, for example, following diagnosis of a child’s serious physical or cognitive disability. Anticipatory grief may be experienced by children with potentially fatal medical problems as well as by those close to them.
Bereavement describes the situation or fact of having experienced loss through death rather than to the emotional content of the experience. Mourning sometimes refers to the social rituals and expressions of grief (IOM, 1984) and sometimes to the psychological process of adapting to loss (Silverman, 2000). Rather than talk of recovery or closure following bereavement, experts in grief and bereavement prefer the concepts of emotional reconstruction or reconstitution. Complicated grief or bereavement refers to a response to loss that is more intense and longer in duration than usual (Prigerson and Jacobs, 2001).
Although bereavement is a term usually applied to family members, feelings of grief may be shared by many others who have known the child or who feel close to the family. The physicians, nurses, and others who care for a child who dies may grieve, whether or not they feel able to express it. Families may feel comforted and supported when these caregivers communicate that they too grieve the child’s death, even as they also offer other support including follow-up information about the child’s death (e.g., after a pathologist’s or medical examiner’s report), referrals to bereavement support groups, and inquiries about the physical and emotional status of par-